If I have learned anything over the past three years it is that what doesn’t kill you, makes you stronger. While I have learned numerous lessons on my journey thus far, there is always room for self-improvement. I know I still have room to grow. I started some serious self-evaluation during the six months before I was diagnosed with Lyme Disease. There was something seriously wrong with me and I didn’t know what it was. I’d come to the conclusion that perhaps the answer was “me”. I threw myself into yoga and meditation. I started reading about self-empowerment and found a psychotherapist to help me work thorough my past. I stopped teaching skiing, moved back to California without my husband and went back to school. I seriously considered leaving my marriage then, but I didn’t want to be alone and at that time I still believed there was hope for us.

The initial exploration of myself made me feel much better about where I was and what I was doing, but I was still physically ill and rapidly getting sicker than I had ever been before. The psychotherapist told me I needed to find a doctor who would believe that I was sick and that there was nothing wrong with my mental state. After 10 years of illness I did find a doctor who believed me and finally diagnosed me. This relieved a mountain of stress and self-doubt.

Around the same time I started experiencing sudden unexplainable shoulder and neck pain which ended my yoga practice. Profound mental and physical exhaustion, along my diagnosing doctor’s stern recommendation, ended the meditation; “Ashley, you need to sleep more than you need to meditate”. Letting the illness be the problem instead of “me” was a relief, even if it was only part of the answer.

If you have never been debilitatingly sick, imagine what it would be like to lose your job, your social life, the ability to take part in any form of sport or exercise, the ability to take care of yourself, and for the most part your friends. You can’t drive a car, you can barely manage a couple of showers a week, and your brain hardly works well enough to string a few sentences together. You see everyone who loves you looking at you with pity, fear and a significant lack of understanding. The sound of someone’s voice can give you an instant migraine. Light can cause you physical and mental anguish. Touch, even something as loving as a hug can be as claustrophobic as a coffin. What are you left with? If you haven’t been through it, I’m not sure it is possible for you to even begin to understand no matter how badly you want to say that you do.

There was a lot of pain, loss and hopelessness. More than any of that though was frustration. Honestly, being sick is really boring. Do you know what it is like to literally be able to do next to nothing day, after day, after day, after day… I had been an athlete. I would often teach skiing all day, go for a three-mile run and then go rock or ice climbing at night. Now I could barely manage to walk around a flat neighborhood. I couldn’t even stay awake all day. I was taking two or three long naps everyday.

As anyone who has been through this knows, diagnosis and treatment result first in symptoms getting worse not better. I was sick in a way that I never knew was possible. Suddenly everything in my life was completely gone. The person I had come to identify myself with was nowhere to be found. I had no idea who I was anymore. All I had left was me, and time to figure out who that person actually was. I also discovered quickly who the other people in my life really were, for better or for worse. Dealing with this was just as hard and just as important as dealing with the physical illness.

I made a conscious decision that I was not going to let this illness define me. I was going to take charge of my life in a way I never had before. Just so you know, there is a learning curve involved here. You don’t just take charge of yourself overnight. Most of us lost control a long time ago and don’t even know it. Reflecting back on my life was eye-opening. I found that I didn’t have any idea who I was before my illness either. For various reasons I was just going though the motions. I had fantastic experiences but something other than myself was guiding them. I lacked real confidence and conviction. I realized I had stopped enjoying my favorite things years ago. Pressure and a sense of what I was “supposed” to be doing had taken over. I was not happy before I was diagnosed and if I wanted to get better I was going to have to face that and make some really tough choices.

I didn’t let my illness define me but there is no denying that it has played a pivotal role in my path to self-discovery and happiness. Now I can honestly say that I am very confident in myself. Where I still struggle is in the ability of others to accept the person that I truly am. I have a tendency to hold back out of fear of judgement. Some people just aren’t ready for a person who has been through so much and carries what they consider to be “baggage”. That “baggage” is my greatest gift. It showed me who I really was and shaped me into the person that I am today. That is the me you really want to know as a friend or a partner. The brutally honest, incredibly caring, compassionate, strong amazing woman who I found when I had what seemed like nothing left.

I’m on the other side of this illness now. I consider myself mentally and physically healthy. I still see my doctor every month and maintain a treatment protocol, I have no intention of relapsing. I also continually have to remind myself of the life lessons I’ve learned and the steps I need to take to be true to myself and honest with the others in my life. Now, if it was only so easy to put that all into practice. Putting yourself and your feelings out on the line is never easy, but for me it is absolutely necessary.

I am committed to myself and to not making the same mistakes in my future. In the past I gave of myself to freely and often forgot to make sure that my needs were met. I didn’t even know what my needs were because I was spending all my time making sure that I was meeting the needs of others. My soul was empty and I felt alone even around those who loved me. You could blame them, I tried that, but the reality is no one can know what I need or how I feel if I don’t tell them.

I have some fantastic friends now, who I have met through Lyme, that have helped me to embrace and love the person that I am. They appreciate my directness and rational reasoning. Characteristics that I felt criticized for in the past and so I hid them. My friends prove to me that I don’t need a false front to be accepted, that there is nothing wrong with me. The people who will stay in my life are the people who don’t mind who I am. The people who mind, don’t matter.

It’s not easy, and my wall is still built pretty high. My self-improvement project is to turn that wall into a picket fence. Brick by brick it is coming down. The more I find the courage to be myself, the faster it crumbles and the more enriched I become. Being me and being happy is the greatest gift I can have, and share with those around me.

One of the lessons I am working on.

you're a good man charlie brown

You're a Good Man Charlie Brown

If you are in the California Bay Area don’t miss these performances of,

You’re A Good Man Charlie Brown

Brought to you by the LymeLight FoundationProviding funds enabling children with Lyme disease to receive proper treatment and medication, as well as raising public awareness about Lyme disease. Through various fundraising vehicles,  LymeLight Foundation sponsors a variety of events around the U.S. throughout the year.
Performances: June 10th, 11th, 17th and 18th at 7:00pm at Campbell Performing Arts Center, Sacred Heart Preparatory/Atherton
Though considered a “good man” by his friends, Charlie Brown can’t seem to win the heart of the Little Red-Haired Girl, nor his friend Lucy, her crush, the piano-playing Schroeder. Meanwhile Snoopy and Linus daydream and the rest of the friends battle with kites, school, baseball and misunderstandings before finally coming to realize what makes them truly happy.
Complimentary showing 2:00pm, Saturday, June 11th for those with Lyme Disease and their families. Please join us. Choose seats under the “Purchase Ticket” link.

Buy tickets


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The idea of dating when you are chronically ill is terribly daunting. How do you meet someone to start with? And if you do meet someone what would you talk about??? What is he going to think when he looks in your fridge? What is she going to think when she finds your enema kit hanging in your bathroom? Is you earthing sheet or sleep sanctuary going to make him think you belong in a different kind of sanctuary?

We thought it would be fun to write some upfront personal ads. Please feel free to add yours in the comments!

Personals written by Ashley, Candice and Eric. Don’t even try to figure out who wrote which!

***

Attractive 30 something seeks tall, confident, successful man late 30′s-40′s. Must have a strong stomach and be down with reverse lattes, homemade nasal spray, talking about my worm collection, strict diets and long naps.

***

Sensitive female looking for a strong, compassionate, fragrance free man. Familiarity with ambulance and emergency rooms is a plus.

***

Looking for tall, attractive, easy going, mature, currently employed man. Must live in a 2 bedroom house, at minimum. Personal transportation preferable, and bicycles don’t count. Must be down with the fact that I put coffee up my butt, pee up my nose, and stick coconut oil on anything or anywhere that looks suspicious. Must be okay with eating all things green and abstaining from most things white, and eating meals that only consist of 3 or 4 ingredients. I don’t really dine out and you’re probably not going to want to come back to my place.

***

Single young female looking for attractive and friendly 20-something male, whose brain resides in his head and not elsewhere. Must either be in school or employed. Paramedics and pre-med students are a plus. Must not be alarmed by cardiac episodes, and bonus points if experienced in CPR.
***
Looking for tall, attractive, 20-something male with good sense of humor. Must enjoy short walks on the beach, and long afternoons on the couch. Preferably fragrance free and down with the aroma of cooking cruciferous vegetables. Must be okay with never dining out, and should be familiar with terms such as “gluten”, “methylcobalamin” and “encephalopathy”.
***
Young female looking for knight in shining armor. Preferably tall, dark and handsome, but will make exceptions for those employed by nutritional supplement companies, Whole Foods, or the medical industry. Must be in good condition and preferably able to occasionally lift 105 pounds. Must entirely abstain from use of cigarettes and cologne. Abstaining from glutenous foods and all things sugary and frosted is a plus. Incredibly open mind required.
***
Single  female, 30 something, interests include health and extreme wellness despite her lack of it. But, she doesn’t look sick so you can be proud to have her by your side when you take her out to meet your friends. You may have to ask her not to speak for fear she will say something that the average person will most likely find offensive. For example she has a habit of talking about bowel movements while eating, especially in large groups. She will also tell everyone about all her parasites. No matter what craziness comes out of her mouth you must believe her. Chances are every word of it is true.
***
Sensual 30 something, with a bit of a wild streak, looking to break barriers and expand boundaries.  Very hot… due to chronic illness induced temperature intolerance. Thanks to illness’s effects on the brain I have several personalities for you to choose from.  Must be open to unorthodox enemas.  If unorthodox enemas excite you, then I’m not the girl for you. Money can’t buy happiness, but I’m willing to give it a try.
Turn ons:  Gluten Free food, Good health insurance coverage
Turn offs:  Being awake more than 12 hours a day, Ticks, People who put coffee in oral orifice’s, Infectious Diseases Society of America
***
Shy, intelligent, sexy 30 something, back on the scene.  I live an extremely alternative lifestyle, but still looking for soul mate.  Extreme lifestyle includes:  Coffee Enemas, Urine sinus drops, Strict diet, severe gastrointestinal distress (I’m not ashamed of what goes on in there, you shouldn’t be either), bladder control issues (tickling is out of the question) and a severe addiction to pills, mixtures, drops and powders.  Looking for soul mate, someone with great health insurance, nice 401K, access to medical care and looking for possible future commitment (to me, and the costly life saving treatments I will require that you pay for).

Remember the nursery rhyme about the old lady who swallowed a fly? I’ve had that song stuck in my head for the last few days. To me it illustrates something I learned at the Klinghardt conference last weekend.

I’ve never thought too much about the order of treatment when it comes to Lyme. All doctors seem to have their own theories and protocols that work for them and their patients. Klinghardt treats in this order: parasites, then mold, then bacteria, then viruses.

Why? Well this is where the old lady who swallowed a fly comes in. Klinghardt is treating from largest to the smallest micro organisms. If the old lady was right, she swallowed a cat to catch the bird to catch the spider to catch the fly… So theoretically the old lady now has all these animals inside her and each of those animals now also has all of the smaller animals inside them. The same goes for the micro organisms.

The bacteria are infected with viruses, the mold is infected with bacteria and viruses and the parasites are infected with mold, bacteria and viruses. If you start by killing viruses they are going to be re-released into your system when you start killing the bacteria, and on up the line. Thinking like this, starting with the largest micro organism and working down to the smallest seems like the most logical way to go.

If you are looking for Lyme disease awareness bracelets/bands, Lymenaide has them. Awareness bands are a great way to spread awareness this May. Strangers ask me all the time what my green band is for. Such an easy way to open up a conversation and educate others about the seriousness of Lyme disease.

Lyme Awareness Bands

Lyme Awareness Bands

Price for the lime green rubber awareness bands are as follows:

* 20 for $50 ($2.50 each)
* 10 for $30 ($3.00 each)
* 5 for $17.50 ($3.50 each)
* Under 5 = $4.00 each

The knotted awareness bracelets are also available for $13 each. If you order 5 or more the price drops to $11 each. Each knotted awareness bracelet comes with one green rubber awareness band (as pictured above).

When you make your purchase through PayPal please leave a note stating what you are ordering and check that the address you have listed on your PayPal account is the address you want your bracelets sent to.

Pay with PayPal – https://www.paypal.com/cgi-bin/webscr?cmd=_s-xclick&hosted_button_id=VNLN2NV2TUSAY (if this link stops working email ashvantol@lymenaide.com, she will get you a working link)

If you have questions or would like to pay by check send an email to Ashley at ashvantol@lymenaide.com .

Turn the Corner’s Virtual Walk is a fantastic way to participate in Lyme disease awareness month this May! I’ve always wondered why there are walks for Lyme. Why walks for people who are often to sick to leave their homes? The Virtual Walk is the perfect solution!

The first 500 participants to sign-up with a donation of $35 or more will get a FREE WALK T-SHIRT. Wear it proudly in your own community on May 15, 2011.  Join Now!

Additionally to raise even more awareness, Turn the Corner has prepared a Template Press Release and a Template Letter to the Editor to be personalized by all walk participants and sent by you to your local newspaper, blog, or on-line news service.

Money raised from the Virtual Walk will support Turn the Corner Foundation’s new campaign to raise public awareness about Lyme disease and tick-borne diseases, on-going research projects and the Physician’s Training Program, which provides medical practitioners the opportunity to study with a Lyme-literate health care professional.

Please share and encourage your friends and family to join us all in fighting Lyme this May. Ask them to help us Turn the Corner on Lyme together!

Sign up for the virtual walk now -
http://www.firstgiving.com/fundraiser/turnthecorner/virtualwalk

Lyme Disease Awareness T-shirt

Lyme Disease Awareness Month is right
around the corner!

During May and beyond, wear this lime green “UNITING TO FIGHT” tee.
Show solidarity, and draw attention to the serious issues
that Lyme patients deal with every single day.
$1 from every sale will be donated to the MAYDAY Lyme Rally, planned for May 21 in Washington, D.C.. Information on the event can be found here: https://www.facebook.com/event.php?eid=192479750772651&ref=ts

All orders must be placed by April 15th.

Ready to purchase your shirt??? Follow this link – http://visualyme.blogspot.com/2011/04/lyme-disease-awareness-t-shirt.html

Tees will be shipped out to you by May 10th.

Lyme Disease Awareness Necklace Giveaway Winner:


Judy from Minnesota!

Congratulations Judy! When asked to comment with what she plans to do to spread awareness in May, Judy wrote:

“We are planning to have all of the business in town painted with a lyme awareness ribbons on their business windows. We have a day planned with vendors, food, walk awareness walking through town! Silent auctions, speakers about lyme , face painting, Under Our Skin film, memorial for those who have past away and much more. I am the President of the Support Group….this is on May 14th in Pequot Lakes, Minnesota! We are excited and raring to go!”

Lymenaide thinks that’s awesome, Judy. Keep us posted on “the scoop” on the event. We hope it goes well!

Keep up the hard work, everyone. No awareness effort is too small or insignificant. Just one person educated could be one life saved.

Judy: Please get in touch with us or include your email address in a comment in this post so we can contact you about what you’ve won.

Keep up the good fight!

With Lyme Disease Awareness Month quickly approaching, it’s likely that we are all going to begin to break out our lime green apparel in preparation to show our support. During the month of May, lyme patients typically adorn themselves with lyme awareness t-shirts, stock up on informational pamphlets, and turn their facebook profile pictures “lyme green”. It truly is quite a magnificent sight.

What is even more encouraging though, is when someone outside of the lyme community stands by our side in the effort to spread awareness and educate others about this underestimated infectious disease.

Tracey of Tiz Designs Jewellery recently handcrafted a lyme awareness necklace and donated it to Lymenaide to give away. Though Tracey is not a lyme disease sufferer herself, she’s been a wonderful support in our effort to spread awareness and educate others about the disease. Her compassion and support most likely stem from her own struggle with Crohn’s Disease. She admirably does not let her own condition stop her from being the unique artist and jewellery designer that she is.

Giveaway Item


Hand Crafted Lyme Awareness Necklace

Be prepared to show your support and spread awareness this May by entering to win Tracey’s handcrafted lyme awareness necklace. Tracey strives to create most of her jewellery from fair trade, eco-friendly, or upcycled material, so ontop of supporting the lyme community, you will be supporting the environment as well. Each piece of Tracey’s Jewellery is unique and one-of-a-kind, so you will be guaranteed to be sporting a lyme awareness necklace like no other.

To Enter, do at least one of the following:

-Comment on this post and tell us about what you plan to do this May during Lyme Disease Awareness month in order to spread awareness and show your support. Have a favorite lime green article of clothing? Plan to do educate others? Going to tie a lime green ribbon around the tree on your front lawn? Do share.

-”Like” Lymenaide on facebook, and share a link to this post. Comment on this post letting us know that you did.

-”Follow” @Lymenaide on Twitter, and tweet a link to this post. Comment on this post letting us know that you did, with your Twitter account name.

Important: If you choose to do two or three of the above, create a separate comment for each action. Each comment counts as one entry (therefore a person may enter a total of three times, if they do all 3 things. This is not mandatory).

Include your email address at the end of your comment so we have a way to contact you if you win.

Entry period will close Thursday, March 31st and the winner will be announced April 1st here on the blog.

Enjoy, and Good Luck!

Special Thanks to Tracey Madden of Tiz Designs.

This past weekend, I paid a visit to my Grandparents’ house. When you’re chronically sick with a rather complex disease, packing for even a short trip can be quite the feat. Though it took a terribly long time to accomplish packing myself up, I was proud of the fact that I made it through the process in one piece, and that I had condensed my belongings to what seemed to me like a measly one suitcase, six cloth shopping bags, a garbage bag and a small laundry basket. Yet to my surprise, upon arriving to pick me up, my Grandparents marveled at the amount of things that were coming along with me.

“How could such a little girl need so many things?” My Grandma said with a smile, as she gazed wide-eyed at my pile of loot.

“After we’re done loading your bags into the car, I hope there’s still room left to bring you too!”

I followed her stare back to my belongings and scratched my head. It didn’t seem so bad, considering that when I’m preparing to take a day trip to visit my doctor every week, I pack as though I plan to move into his office. This was the first sign that while I’ve been living with another lyme patient, I’ve gotten a little too used to being perfectly abnormal.

Fellow SpiroChick and lyme patient, Ashley, and I have been roommates for over two months now. It’s been a pretty fantastic experience. We’ve of course hit many of the trials and tribulations of both life and of being a Late Stage Lyme patient, but we’ve taken on those obstacles together. Living with someone who’s had to adapt to the same lifestyle that you have, and who has battled the same battle that you fight on a daily basis, provides an invaluable sense of understanding and comfort. It’s also quite possible that it provides a false sense of normalcy. To us, our daily routine now feels “average”, because both of us live it out together under the same roof. When in reality, we might as well be living on Mars.

We often joke that we’re never going to be able to find men that are going to want to date us, considering our odd acquired habits and rituals. After all, how many guys would be thrilled to come home to a girlfriend doing yoga on the living room floor while she’s got a pot of millet and green peas burning on the kitchen stove?  A magic eight ball would probably tell me “outlook not so good”.

Yet, I love it. I love our perfectly abnormal life. A year or so ago though, I used to resent it a little. My daily life would feel as though the world was spinning on around me while I was stuck stagnantly in place, trapped in some alternate reality. Now I realize though that your world is what you make it. My world may be small, full of monumental obstacles, and entirely stripped of what it used to be, but it was never going to grow if I didn’t accept it. Once I did, I found that though my world is quite difficult and far from normal, it’s unique, and there are still plenty of opportunities to enjoy it. That is, if you’re looking in the right places.

It’s far easier to fair when you’re living with someone whose reality resembles your own. While I stood in my Grandmother’s kitchen this weekend, she looked on apologetically with a crinkled nose, as I prepared a glass of liquid medication and counted out the smelly drops as they fell from the dropper.

It must be wonderful to have a roommate who has to do these kinds of things too.” she said. I nodded in complete agreement.

“Nana, off of the top of my head, I could probably think of 15 reasons why living with another late stage lyme patient has been nothing short of fabulous.”

15 Reasons Why Two Late Stage Lyme Patients Make Fabulously Strange Roommates


1. Most average roommates have designated cupboards for alcohol, or for easy-to-prepare foods like hamburger helper or macaroni and cheese.  Instead, you and your roommate each have entire shelves sectioned off for pills, potions, and medication. Your easy to prepare “go-to food” cabinet consists of cans of organic white beans and jars of raw sesame seed butter.

2. Lyme patients often have to set alarms in order to wake up on time, remember to take pills, or to assure they eat enough throughout the day. When two patients live together though, you can double as both roommates and walking, talking alarm clocks. You typically know when it’s getting to be late and your roommate hasn’t taken her adrenal medication yet, and she also knows that it’s time to eat again when she starts to smell your brussel sprouts steaming from two rooms away.

3. With all of the cabbage, cauliflower, broccoli and brussel sprouts that you both typically steam, the average person might walk into your house and think it smells like the dog has some pretty gnarly gas. But when your roommate comes home from the grocery store and gets a whiff of a cruciferous veggie steaming, she drops everything and starts cooking too, because beef and cabbage sounds like its going to hit the spot.

4. You and your roommate both know “the face”. You know, that face that you get when your brain starts to feel like it’s full of hot wax and cotton balls. When you have company over and one of you starts to glaze over and zone out, the other picks up on it pronto and takes over the conversation. Typically, “the face” goes unnoticed by guests and “normal” folks. They just think you’re just quite an intent listener.

5. Your roommate doesn’t think it’s weird that you constantly feel motivated to go lay flat on the front lawn. In fact, she encourages it, and will lay out there with you despite the status of the weather reports. There’s even a name for it: Earthing. Your neighbors probably half expect you both to start hugging trees, but it’s all good.

6. You both sort of instinctively know what might be helpful to one another. When your roommate throws out her back, you know how long her hot rice pack takes to heat in the microwave. When you’re packing to head out to the doctor, you know what to throw in your snack bag for her in case she gets hungry too. When she’s got somewhere to be and she’s running short on time, you know how to cook the lunch she was hoping to pack. Whereas asking just anyone to do such things might be a little overwhelming if they aren’t fluent in “lyme patient”.

7.  Your roommate knows that when she catches you lathering up your arms and legs with the same coconut oil you just cooked your veggies in, you’re not planning to roast yourself too. To the both of you, cooking oil doubles as a perfectly acceptable organic body lotion.

8. When you open up the gnarly bottle of pills that makes your kitchen smell like stinky feet, your roommate doesn’t cringe and check to see if something curled up and died in your garbage disposal. Instead, she hurries to the cupboard because the pungent smell reminds her that it’s time to take her afternoon dose of pills too.

9. When you send out a friend or a family member to pick up some groceries for you at Whole Foods, you typically have to set aside 15 minutes to explain things like what swiss chard looks like, how to pronounce “quinoa”, and which aisle you might find gluten free oats. But when you hand your roommate your grocery list, she glances at it, then merely asks, “Rainbow chard or red? I like rainbow, myself.”

10. Instead of rolling her eyes every time some off-the-wall thing makes you sick, your roommate can often warn you before it even happens. If you’re on a walk and she breathes a whiff of gasoline before you do, she responds with a “quick, cover your nose!”. If she’d been two seconds later, she’d probably would have had to peel you off of the sidewalk. But if that had indeed happened, she wouldn’t have griped about that either.

11. While most of the population believes that a scoop of vanilla ice cream is the ingredient that completes a fruit smoothie, you and your roommate think that a beverage isn’t perfectly blended until you’ve added an avocado. Most might scoff at adding anything green to their milkshake (unless it were mint chip ice cream), but you both don’t consider it to be complete if you haven’t.

12. While alternative healing therapies and the notion of “detox” seem outlandish to others, you both fully embrace them. At this rate, between her unconventional use of organic coffee and your use of a neti pot, you two are bound to make Roto Rooter jealous.

13. When the guy who’s installing your new furnace comes in to test it out, he ends up sticking around for a while and chatting with you both, because he thinks you’re intriguing. He then proceeds to ask what the lime green awareness bracelets that are sitting on your dining room table are for, and when you tell him, he asks if he can buy a few. He informs you that you both have a “righteous positive energy”.

14.  You and your roommate are oddly able to laugh during occurrences that most of the general public would find quite unnerving. When your heart starts going into strings of irregular heartbeats and your blood pressure cuff starts flashing all sorts of different abnormal codes and symbols, she doesn’t get frustrated or anxious as she drives you to the doctor. Instead, you find things to laugh about on the way there, and you both even manage a giggle when you’re forced to inch out of the car as though you’re 112 years old.

15.  When you wake up and tell your roommate that you’re having a bad morning, she can actually fathom what that might mean.  She doesn’t think that “bad” might equate to feeling tired, achey, or sick to your stomach. She knows what this kind of sick feels like, because she understands what it’s like to have every organ in your body affected by an infectious disease. And when she nods and tells you that she’s sorry, she really, truly means it.

My life is challenging, unique, odd, timultuous, fascinating, and completely out of the ordinary. Yet I’ve come to discover that though I don’t have a choice in what my life may look like right now, I can choose whether or not I’m going to accept it, and it’s up to me to decide if I’m going to love it or hate it. Despite the hardship and lack of normalcy, I’ve chosen to love it. Living with another patient who has made the same commitment makes that choice a whole lot easier. Ashley and I live in a perfectly abnormal condo, and I’ve loved (almost) every minute of it.

Is your household perfectly abnormal too? Well then, rock on.

 

Originally posted on Infectiously Optimistic

Thank you to everyone who commented and shared on our Recipes for Repair review.

Our three lucky winners are…

Candy
Gina Moore
and
Kathryn Thome

Winners have been notified by email.

If you didn’t win a copy and would like to purchase one, Recipes for Repair is available on Amazon

Keep a look out, Lymenaide has another great giveaway coming up soon!!!

Mother and daughter team, Gail and Laura Piazza, have done a wonderful job putting together this beautiful cookbook that follows Dr Ken Singleton’s anti-inflammation diet. Dr Singleton introduced this diet as the Lyme Inflammation Diet in 2008, in his book The Lyme Disease Solution

As a sufferer of Lyme disease himself, Dr Singleton’s The Lyme Disease Solution provides comprehensive and integrative approaches to Lyme disease recovery, including the crucial role diet and food play in healing.

After being diagnosed with Lyme and reading The Lyme Disease Solution, Laura, a photographer and graphic artist, consulted with her mother Gail, an accomplished cook, home economist and food stylist and Dr Singleton to create Recipes for Repair: A Lyme Disease Cookbook, to help others and to accompany Dr Singleton’s Lyme Disease Solution.

The photography and the design of Recipes for Repair is fantastic. Beautiful images of the recipes are a must for me when it comes to any cookbook, and Laura doesn’t disappoint. Even more impressive to me was the layout of the entire book and each individual recipe. The diet is divided into four color coded sections. Each section starts with a list of “allowed” foods. The index, as well as each page, also have clear icons to quickly inform the reader about general food exclusions (gluten, dairy, egg, low sugar and vegetarian).  My Lyme brain truly appreciates the time that was obviously spent to ensure the book was easy to navigate.

Artichoke Leek Soup

The Recipes
Over the past month, I have tried 13 recipes from the book. Some of the recipes were very simple to make, like the Stir-Fried Chinese Cabbage, Leeks and Pine Nuts. Others, like the Salmon Cakes, were more complex and time consuming. I had no problem finding any of the required ingredients but for some of the recipes, I did find the list of ingredients long and daunting. For example, Meatballs and Spaghetti Squash required a whole second recipe for the tomato sauce.

Sweet and Tangy Baked Chicken ★★★★★
A friend made this recipe for a monthly dinner that I go to with a group of my local Lyme friends. It was fantastic, and really tasty. I can’t comment on the ease or difficulty of the recipe.
Carrot Almond Pancakes ★★★★★
This was the first recipe I tried from the book. I loved them! They were easy to make. They cooked and stayed together well. They were like real pancakes, only better.
Pumpkin Custard ★★★★★
This one was made by another friend for the same Lyme dinner as the Chicken dish. It was great. We all agreed that this might just be our new Thanksgiving pumpkin pie recipe. I can’t comment on the ease or difficulty of the recipe.
Mixed Herb Pesto with Brown Rice Pasta ★★★★
I have always heard about adding some of the pasta water to your sauce, but I had never actually tried it. Wow, what a difference. The pesto sauce was so much creamier than any pesto I have made before. Removing all of the leaves from the stems is always my least favorite part of making pesto. I liked the taste a lot but my body really didn’t deal well with the garlic.
Coconut Chicken Tenders ★★★★
I was amazed at how well these turned out. I expected all of the batter to fall off in the pan but it didn’t. They held up really well and were great reheated for lunch the next day too. Making the coconut milk for the batter was time consuming and probably not necessary.
Stir-Fried Chinese Cabbage, Leeks and Pine Nuts ★★★
This was an easy dish and was pretty tasty. I think next time I would like to try it with the Bok Choy as suggested. Cabbage can make you gassy.
Coconut Almond Custard ★★★
These weren’t nearly as good as the Pumpkin Custards. I wasn’t entirely sure if I was supposed to use the whole egg as the ingredients called for or just the egg white as the instructions alluded to. I used just the white but didn’t find that the custards set up very well. The taste was eggy but still good.
Sautéed Asparagus Omelet ★★★
Super Simple. I love asparagus. I have to admit that an omelet without cheese doesn’t really do it for me though.
Artichoke Leek Soup ★★
I used canned artichokes for this recipe. I would recommend finding frozen hearts instead. Over all the soup was alright, but the artichokes were fibrous and very tangy, perhaps it was the citric acid that had been added to the can. Easy to make.
Salmon Cakes ★★
These made nice cakes but the fish was too much for me. Also, the recipe was time consuming and if you followed it exactly, it required two other recipes.
Indian Chickpea and Spinach Fritters
★★
Again, these made nice patties but they really didn’t agree with me. Much easier recipe and less time consuming than the Salmon Cakes.
Almond Milk – easy
Coconut Milk – easy

Coconut Chicken Tenders

About the Diet
I respect that Ken Singleton is a Lyme Literate Medical Doctor. I am also happy to know that he recognizes the role that diet and nutrition play in our healing from Lyme disease. I think that there are too many doctors out there who never even touch on the subject of diet with their Lyme patients.

While the cookbook works for me, the diet does not. As strictly an anti-inflammatory diet, perhaps the diet is very accurate. With that being said, my personal doctor is very focused on food sensitivities and nutrition. Diet and allergen elimination is a major part of my Lyme disease treatment and has been from the beginning. One of the first things my doctor did was test me for my food sensitivities.

There are a number of items on the phase one “allowed” list that I wasn’t personally allowed at the beginning of my treatment. Sensitivities are always changing, but two years after my first test, my latest list of restrictions still include foods on the phase one list. In fact, my allergen restriction list includes even more foods than the original sensitivity test picked up, because my immune system is no longer suppressed and is able to successfully express what it is sensitive to.

After two years of a very conscious diet, I still cannot tolerate wheat, oats, quinoa, milk, soy, corn, tapioca, potatoes, tomatoes, oranges, pineapples, peppers of any kind, caffeine, or grapes. That doesn’t mean that I don’t sneak them in every once in a while, but I always end up paying the price.

Many of us are suffering from more than just inflammation of the gut. Because our immune systems have been taxed, we have developed various food intolerances and sensitivities.  These intolerances need to be addressed just as much as the inflammation does, because they often produce a significant symptom set of their own.

Deciding on a diet that works for you and your individual state of health is something that you should discuss and work on with your practitioner  to make sure that you are making the best choices possible to aid in your recovery. We are all different, and it is my belief that every person’s diet should be tailored to their own issues, sensitivities and needs.

For more information on food sensitivities, check out this post – click here.

Please remember that this review is based solely on personal opinion and experience.

Would you like to win a copy of Recipes for Repair? To enter simply leave a comment on this blog post telling us about your experience with diet and food sensitivities or leave your favorite allergen friendly recipe as a comment below. Winners will be chosen at random and announced Monday February 28th.

Some of us hide behind a façade, not to keep others out, but to protect ourselves from our own realities.

A few weeks ago my friend and fellow Lymie Candice moved in with me. We both thought that we had been handling our individual situations well. Both of us are strong beacons of hope and support in the Lyme community. We had no idea what an eye opener living together would be.

It is easy to hide online. To only share what you are comfortable sharing and to keep the rest hidden from public view. It is easy to fool the friends and family around you into believing that you are doing fine and managing your health. For the most part, it is too much for them to bear anyway so you elect to carry your burden alone.

When Candice moved in, it was immediately apparent that hiding wasn’t an option. My family might not see the change on my face when my brain suddenly shuts down, but Candice does. When Candice began having a heart episode, I gave her the simple answer to a major symptom she didn’t understand.

In just a few weeks we have learned so much from one another and about one another. We have become truly vulnerable for the first time. For both of us, this is a huge step. We are comfortable in the role of supporter, but to expose ourselves as the ones who need support is very difficult. We realize now that this is one of the lessons that we both need to learn.

We are both facing major life challenges right now both emotionally and financially.

Candice’s main financial support was not able to help her pay her medical bills this month. Her mother stepped in, and was able to pay half of the money owed, but the other half of the bills have suddenly fallen into Candice’s lap. If you know Candice, you know that she has been sick since she was 16 years old. She has never worked or had the opportunity to support herself. If she can’t pay for her doctor, she won’t get better.

For a girl who can’t leave her house due to Multiple Chemical Sensitivity, the idea of having to come up with the money to pay for rent, groceries, and medical expenses is an overwhelming and seemingly impossible task. With the support she has now, she is able to cover just her groceries. When we move out come April, she will be responsible for rent on top of her existing food and medical expenses. If she isn’t capable of working, or even functioning outside of her house just yet, how is she supposed to come up with the money to continue to support herself? Due to debilitating environmental sensitivities, this is a scary notion, because it may compromise her ability to receive the  treatment she needs, and could mean moving back to an environment that severely worsened the condition of her body and the magnitude of her disease.

Contrary to the image I suppose I portray, I am not in remission myself. I still see my doctor at least once a month, but this month alone I’ve had to visit my doctor four times. Functional and healthy are two very different things. When I look at my bank account, I see that my husband and I might make it though the next month. In the back of my mind though, where I’m honest with myself, I know that we probably won’t. I have to start working this spring whether I am ready or not. For someone who still takes naps almost every day because their cognitive abilities tend to evaporate in the afternoon, that is a scary thought.

What choice do I have? My husband and I have been living apart for three months. I could make up some reasons for that, but I think even with Lyme brain you know what that really means. Don’t accuse him of abandoning a sick wife. I am choosing to put my health first, but I am also choosing not to ask him to give up his life, desires and dreams for that. Sometimes a chronic illness changes you so much that you become a different person, and your path in life changes.

We are both dropping our façades, letting each other and all of you in. We may not be comfortable with admitting it, but we are both vulnerable, which we have found incredibly difficult to admit and share.

Today we posted an online auction to raise the funds to pay Candice’s past due medical bill from last month. Please find it in your heart to support her this month.

Follow this link to the online auction- http://on.fb.me/ekeq0U (You will need to “like” the page in order to participate in the auction)
Read More about Candice and the auction- http://bit.ly/f2wR95

Candice’s Chronic Badass Auction is taking place on Facebook. To bid on the “package”, leave a comment underneath the package’s picture, outbidding the commenter above you. If you do not have a facebook account, please view the facebook album, but then email me your bids to InfectiouslyOptimistic@yahoo.com. Please include the number that corresponds with the package you are bidding for.

I love this “Little Tick, Big Problem” shirt! The shirt was designed by Ashley van Tol last year for Lymenaide and is available in all sorts of styles from the Lymenaide Zazzle store- http://www.zazzle.com/lymenaide.

But… instead of buying one, how would you like to win one??? Lymenaide has 8 of these awesome awareness shirts to give away!

We wanted to keep this giveaway super simple so all you have to do is invite your friends on facebook to “Like” the Lymenaide Facebook page. You also have to leave us a comment either here or there telling us what your shirt size is.

Really it is that simple. Here is the link to the Facebook page- http://www.facebook.com/pages/Lymenaide/137229171760?ref=ts simply share the page with your friends and leave us a little note!

When we reach 2100 fans on the Facebook page we will chose the winners at random. We only need 70 new fans/likers to reach 2100 so it shouldn’t take too long.

Help us spread Lyme disease awareness and win yourself some cool swag at the same time!

Happy New Year to all of you. I have never been one to actually make New Year’s resolutions but this year I guess I have.

2011 is the year I will return to health. I’m not just being overly optimistic, my doctors agree. It will be up to me to maintain that health with good lifestyle, eating and exercise habits. Sounds like the stereotypical New Year’s Resolutions doesn’t it! Supplements and a detox regime will remain on my must do list probably for life. Discipline… not one of my strongest suits.

Will I return to 100% health? I don’t know. I’m not sure I even know what that is anymore. I will be well enough for my next resolution though, returning to a full time career. What am I going to do? I don’t know, probably something in advertising, marketing, or PR. That’s what my degree is in and it sounds like a good place to start. My heart would like to devote my time to Lyme disease awareness but karma doesn’t pay the bills.

I’ve also promised not to lose myself. Getting sick is a real kick in the ass. For me getting healthy has put life into a new perspective. I use to think that Lyme took away who I was. Now I think it just striped away the add ons and uncovered who I really am.

For me 2011 is going to be a year filled with changes. They will all be good, but that doesn’t mean that they will all be easy.

I’m wishing you all health and happiness in 2011!

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